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Clanker

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Firstly thank you for taking the time to read and respond.

Abit of background I am a 29 year old male who is overweight and lives a very sedentary lifestyle between sitting for work and laying around on the bed or lounge at home.

Roughly 6-9 months ago I started having my fingers lock up on me while playing computer games (the center joint in the finger) and assumed it was due to over use from my job (8 hours straight of typing) and playing games. This is in both hands primarily the index and middle finger and seemed to be made worse by cold weather, putting a sock over my wrist or running it under warm water seemed to help. I didn't notice any weakness though was unable to straighten my fingers - trying to point with my index finger means it's straight till that middle joint and then points straight down.

3 months ago I noted small muscle hand atrophy, there's no muscle at all between my thumb and index finger on the rear and my thenar has disappeared completely. There are three very visible cords in the palm of my hand leading up to my fingers. This wasting is near perfectly symmetrical in both left and right hand and has led to difficulty in holding objectives (I've never dropped a glass, but buttons are extremely difficult to do). I still have movement in my thumb, my fingers are still very quick but only the little finger can be separated from the rest. The other three I can move maybe a cm apart (without using the other hand).

I seem to get pins and needles infrequently in the tips of my fingers, thumb, palm of hand and bald of my forearm (near my elbow), before all started I recall telling a co worker that it felt like my forearm was on fire at times, that has now gone but returns sometimes in my wrist fires me (bottom). My fingers still feel strong (I can crush a can, lift a 2 litre bottle with them) but my thumb offers nothing but weak support.

about 6 weeks ago I fell when stepping off a large step and hurt myself rather badly , since then my knees are in a lot of pain and I have problems (sometimes cannot) raise myself from a low sitting position (this i attribute towards my extended sedentary lifestyle). I also started having twitches at this time (extremely fast and rather strong) in my calf. Looking at that of course bought me to ALS sites. Since then the twitching has moved to occur all over (again it's fast, strong and only lasts a few seconds) generally I can stop it if I move that muscle.

For full disclosure my anxiety has gone crazy and I've lost myself caught up in this spending up to 4-5 hours some days just reading the same or slightly different information over and over. I have a 4 and a 7 year old and a wife and it terrifies me that I may not be able to continue supporting them.

Thanks for your time.
 
The great news clanker is that ALS is an oldies disease and is most common in people who were incredibly fit and healthy.

Sounds like your sedentary lifestyle is taking it's revenge on you. See your GP, be really honest about all your fears and I'm sure you can get help mate.
 
Thanks for the reply Tillie ... I'm off to the GP tomorrow after putting it off for a long time (fear and anxiety) - stupid I know. Hopefully this turns out to be the biggest wake up call of my life - you never know what you've got till its gone (or you face the thought of it being gone)
 
Went to the doctor today, he didn't really know what to think. He noticed that ive got muscle wasting all the way up to my shoulders, still symmetrical. He tested a few reflexes in my arm that responded normally (but just my wrist and upper forearm). I mentioned ALS to him and he said that's his concern but the symmetrical wasting and my age are strange for it.

The look in my partners eyes broke my heart =/
 
Yeah, your age and the symmetry point away from ALS.

"in both hands primarily the index and middle finger " No. The onset of ALS would strike one hand, not both.
"wasting is near perfectly symmetrical in both left and right hand" Again, symmetry.
"pins and needles" and "forearm was on fire" Nope. These are sensory symptoms. ALS is about failing, not feeling.
"twitches" Twitches are very common to many conditions. Even healthy people have twitches. Don't go to ALS because of twitches.
"I mentioned ALS to him and he said that's his concern" I'd take this with some skepticism. GPs are not experts on ALS. Even some neurologists aren't. My experience, and many others', is that many doctors and nearly all other medical people really don't understand ALS.

Did your GP refer you to a specialist? If you're really worried about ALS (I'm not), you might ask for referral to a neurologist who specializes in ALS. But frankly, I don't think you're looking at anything fatal.
 
I don't know the health services in your area, I'm further up the north coast than you, but if you wanted to be seen by a neurologist don't go to a local one as they will not specialise in ALS. Get referred down to Dr Rowe in Sydney.

Now having said that, as Mike says a GP is unlikely to know anything much about ALS - and a country city GP has probably NEVER seen anyone with it.

I don't think you are presenting with the symptoms, so what did your GP say is the next step in investigating it all?
 
Thanks again to both of you for your imput. Basically I left feeling rushed out he only tested those reflexes because I directly asked him to. I tried to bring up about my lifestyle and my anxiety but he didn't pay attention - mostly he was staring at a computer screen trying to find symptoms on their database. I tried telling him other things I thought might be useful or important like sometimes I get cold/burning feelings or pins and needles in my shoulder blades and my toes have felt numb (no loss of movement though) for a year (I also get pins and needles in the bottom of my feet regularly)

Next Thursday I go back to him for a physical and hopefully my bloods are back by then too (they may not be), he said I'd need to see a neurologist but didn't suggest or arrange anything. I think mostly he was shocked at what was presented to him and didn't really know where to start or what to do.
 
OK, your GP is working on it, that's good. He has started the usual processes of testing and that is good too.

It's xmas eve now for us. Please understand I've been through this whole thing, so I'm not being trite. We thought not knowing what was wrong with Chris was the pits. Once diagnosed we discovered not knowing meant we had some hope. A diagnosis of ALS is a death sentence and you don't have that. What you do have is a wife and kids. Do all you can to put this aside now and spend quality time with them - at the end of the day that is what life is all about, the most valuable thing you own is the happiness you make with your family.

There are so many other things it is far more likely to be. For now you don't know what it is, so if you can let go and be there with your family now, you will never regret it no matter what is in the future.

Let the process unfold in the new year and live the rest of this year.

We lived every day to the fullest, then when we got the diagnosis everything changed in a blink. I have never wished we had been diagnosed earlier.
 
It seems so unrelated to the muscle wasting of my arms, but do you think it would be worth mentioning to the doctor/neuro that sometimes I experience weird sight problems. It starts with blurring of one eye (its like looking through a crystal) and eventually spreads to to up my entire vision where everything is displaced. The first time I had it happen was about 8 years ago, it occured and lasted for a few hours, then about 3 years later it happened again accompanied by the inability to speak coherently and vomiting, then its started happening again this year (about 3-4 times in the last 3 months) usually have it happens I get a headache for a few hours.
 
You should tell the doctor all your symptoms and let them decide what is related. That certainly does not sound remotely like MND but Since you don't know what is wrong it is important to give all the information and let the doctor sort it out
 
Definitely tell your doctor every symptom, any little detail could be important.

Eye problems again point away from ALS, give your doctor as big a picture as you can. Write down your symptoms and in a timeline, this really helps to give a clear picture.
 
Back from the GP, he has referred me onto a local neurologist (will see them and then depending on how it goes look for a referral down to Sydney) and also booked in for Spinal X Rays on Monday the 4th, neurologist is closed until the 5th so will make the appointment then.

Bloods came back only things that stood out in it are
Creating Kinase 428 so definitely something going on (I mean the atrophy is really obvious without that)
Transferrin Sat 24%
Serum ferritin 518

On the bottom of the page for the last two it mentioned something about liver failure or possible body wide inflammation causing the high levels?
 
Had my neurologist appointment today, initially it was just going to be a consultation but he ended up doing an ecg and the emg (the needle test).

My emg showed nothing unusual in the way of fasculations (which surprised me because I twitch like crazy), other then that he made no remarks about the emg, my ecg came back with very abnormal response in my arm (apparently almost no conduction in it) based on the ecg and emg and that all my reflexes were either normal or slow (and symmetrical) he has said it is no presenting as ALS and he has said it looks like MMN with conduction block and will start me on IVIG. The only reflex that tested brisk was my jaw. The other big pointer away from ALS as you all said was it is effecting all 4 limbs to the same degree at once.

I want to thank you all again for what you are doing here. The support you give each other and all of us that arrive each day is incredible.
 
Thanks for the update. Good luck with IVIG. MMN is certainly a nicer answer and fits better with your age. There is or used to be a specific MMN support forum on the web plus a good facebook support group ( MMN was raised as a possibility for me based on bloodwork at one time but it wasn't. I did not have conduction block like you ever)

Btw did you mean ecg? The test I know you had to show conduction block is called here ncs ( nerve conduction study) and ecg here is an alternate abbreviation for electrocardiogram more often known as EKG. I didn't know it was called differently there

Best of luck
 
Sorry yeah thats right it was a NCS and the EMG. I know I'm not 100% out of the tunnel but it's nice that there's a light there. Thanks very much Nikki!
 
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